Mum on a mission to raise awareness of rare skin condition

A Carrickfergus mum is on a mission to raise awareness after her little boy was born with a rare skin condition.

Hannah Cree’s three-year-old son Elijah is living with Congenital Melanocytic Neavi, or CMN.

Hannah and her husband Adam with Elijah and Ari Ela. INCT 02-724-CON

A type of birthmark, CMN presents as a brown or black mark (naevus) on the body and can vary greatly in size.

Single small CMN are found in one percent of newborn babies, but large or numerous marks occur in 1 in 20,000 births.

Problems in the brain or spinal cord are the most common complication seen in children with CMN, according to Caring Matters Now, a charity for those affected by the condition.

Issues can also arise due to the fragility of the skin at the site of the birthmark.

Elijah will be four in May.

“Elijah was born in May 2014 with a 10-12cm black mark and a deep cut [both] on his scalp. He looked like he had had a difficult time,” said Hannah, who also has a five-year-old daughter, Ari Ela.

“The midwives said he must have cut his head on my pelvis on the way out and that the mark was bruising. This didn’t sit with me, but I thought they knew better.”

Hannah and her husband Adam met with a range of health professionals in Elijah's first six months, with concerns initially raised that the mark could be a condition called melanosis.

"We were told this meant Elijah was at a higher risk of developing cancer at some point," the local mum added.

Elijah and his sister Ari Ela.

"He also had a brain scan quite early on, but thankfully it came back clear."

It was Elijah’s dermatologist, Dr David Alderdice, who first told the family about CMN. "He explained that melanosis is a bit of an outdated term," Hannah said.

Dr Alderdice directed the family towards dermatology specialist Dr Veronica Kinsler, who is based at Great Ormond Street Hospital.

“That was a real turning point for us. Dr Kinsler was so comfortable with CMN; she didn’t feed into the fear. She told us that his was one of the least threatening types and encouraged us not to limit anything for Elijah unless we could see it was causing him problems."

The family were also introduced to Caring Matters Now, for whom Hannah is now the Northern Ireland support contact.

“We’re trying to raise awareness about the condition from midwife level up, but also to offer emotional support to families, as we know how devastating it can be for them,” Hannah explained.

“It was the uncertainty that made us so fearful. When you are faced with a rare condition like this, you take in every single word a health professional says as you’re searching for knowledge and security.”

"When Elijah was smaller and his mark was more visible, I worried that everyone was going to be looking at him when I took him out. People could be very rude sometimes, but I came to realise that was more about them and not us."

With the help of Caring Matters Now and Dr Kinsler, Hannah says the family feel more “in control” over Elijah’s condition. “There are about five other children in Northern Ireland who have CMN, and maybe seven down south; as mums we all keep in touch,” she added.

“Elijah still has a number of satellite [smaller] marks and we have to monitor him to make sure there are no changes.

"He knows he has 'special skin' and we have to be sure he doesn’t knock his head, as it could still get cut very easily.

“He’s at a great wee nursery in Carrick, Woodburn Pre-School, and they have been amazing with him.”

More information on CMN is available on the Caring Matters Now website at www.caringmattersnow.co.uk